Live in Respite Care for two parents both with Alzheimers...
Hi everyone. My first post on here but not the first time I've looked. I've found this site really helpful over the last year or so as both my parents have are moving forward with their own Alzheimers condition.
Mum, being the organiser and rock of the family, realised something was going wrong with her memory back in 2014 and took herself off to get checked out, she was diagnosed in 2015.
My dad, the ruler but not the 'doer', was diagnosed at the beginning of 2017. I think because his speech wasn't affected, and he wasn't being challenged in any way to do anything at all really, like the shopping, bills, appointments, car tax, cleaning, cooking, washing etc... he went undetected for quite a long time (a generational thing!) He is actually further advanced than my mum.
My brother and I have been keeping a closer and closer eye on them over the last couple of years. We had carers in for an hour or so once a day to make sure they were having tablets and eating etc and then we would go in too to check on them.
On 2 January late at night we had a call from my dad. He was hallucinating quite wildly and was up around the house trying to ring the police to get them to come and stop the marauding mob outside from getting in. He was really agitated and upset. I calmly took him to look out of every window to show him all was ok. He eventually went back to sleep but obviously mum was very upset and frightened. He was like this for three days - but no urine or chest infection.
Suddenly after a few days, he woke up and everything was 'ok' again - although not where he'd been the week before. They really needed someone with them all the time.
2 Days later, they both fell in the house when I was there! Mum trying to help my dad - thankfully nothing was broken and I was quick on the scene as I was in another room at the time, to get them up and check them over. This obviously didn't help my dad.
Then a couple of days later - my dad started with really heavy bleeding from his penis... (he wears a Tena 24/7 so thankfully it was all contained) An out of hours doctor, scans at hospital and other checks as well as some antibiotics proved that there was nothing sinister and was probably just a burst blood vessel from his enlarged prostate which he does take medication from. After about 5 days the bleeding ceased. Obviously keeping an eye on things...
During this time, I got more and more exhausted as I was not getting good sleep, up and down all night changing my dad etc. I was on the go pretty much 24/7 with the two of them. They both now need help with personal care, dressing and they need someone to cook, make drinks etc etc. I got a chest infection but carried on. Mum then got my chest infection and went off eating for a week and was really poorly and down. She has now recovered but isn't where she was beforehand either. It was then I realised that I still needed to get some extra help in so that I could get some little breaks and reclaim some of my life, and also, if I went down we were all scuppered, I needed to look after my own help.
So, I haven't been home to my other half since then. Bless him, he's very understanding and at least we don't have any kids to worry about but it does change everything. Leaving my home, leaving my job, leaving my income, leaving my social life to a greater degree, leaving my partner.
I'm a self-employed freelance artist and educator - making, selling and exhibiting my work as well as teaching in schools and galleries from primary through to adult and have had to put all this on hold. I have been building this business steadily over the last 10 years... building a solid reputation and earning reasonable money. I am slightly concerned that I will lose my spot on the creative scene and fitting back into that precarious world of freelancing will be harder to build back up again... hey ho. My brother is great - and we get on really well but he has a difficult life and 4 mouths to feed - he does what he can.
Like all of us in these situations, we have no idea how long this will all go on for. At the minute I feel that this is the right thing for me to do, it's what I want to do. I realise I need to be doing it until such a time as something happens to one of them and the next chapter will unfurl.
However, last summer I booked an exciting adventure with 3 girlfriends - 2.5 weeks away to Asia. Flights and everything booked. I was toying about whether I should still go or not. The parents have now all simmered down and are on a plateau but are still in need of daily help. The carers I had in do not do respite or overnights and I have been fretting about what to do for the best so that I can still get on holiday.
I have been in touch with Adult Social Care and am still awaiting assessments for both parents and for me as a Carer - however, time is running out and I doubt they would be able to help me sort cover out so soon and for so long.
I have also looked into Respite in Care Homes - tricky for a couple at reasonably short notice.. (going at Easter) as well as other things to consider. I have come to think that the least disruption for my parents would be to get a live in carer for 3 weeks (I don't think they do part weeks.) At least this would give me time to see that everyone settled in well before I departed. Also, for me to suddenly disappear and their surroundings to change would be hugely unsettling and disturbing for them.
So - lovely people out there - have any of you had any experience of respite live in carers? The positives the negatives, recommendations? Things to consider? I think I have to go on this holiday. I need the break. If I cancel it now and my parents go on another 10 years (unlikely but you never know!) I'll be 63 and maybe not up to as many adventures. My dad's 89 and my mum 83. My mum's mum did live to 100 but never diagnosed with Alzheimers and was pretty independent.
Oooh so I have rabbited a lot here - trying to write stuff down as quickly as I can before I go back to researching live in respite care for a couple with dementia. I think I need to act quickly to get it all set in place. I haven't yet told the parents I'm going - I don't want to worry them unduly until the time is right but I do keep dropping hints to mum that I will always make sure they are safe and looked after, whether by me, or someone else - they are my priority. Mum gets this. I am still very anxious to be leaving them but feel I need to have a life too... my dad's held me back in so many ways in my life and I have a fear he may be doing it again...
So - live in carers - thoughts/help/advice please!
Thank you all for reading to the end! - Sorry so much to read, I hope to hear back from those of you with respite care experience soon!
Hi everyone. My first post on here but not the first time I've looked. I've found this site really helpful over the last year or so as both my parents have are moving forward with their own Alzheimers condition.
Mum, being the organiser and rock of the family, realised something was going wrong with her memory back in 2014 and took herself off to get checked out, she was diagnosed in 2015.
My dad, the ruler but not the 'doer', was diagnosed at the beginning of 2017. I think because his speech wasn't affected, and he wasn't being challenged in any way to do anything at all really, like the shopping, bills, appointments, car tax, cleaning, cooking, washing etc... he went undetected for quite a long time (a generational thing!) He is actually further advanced than my mum.
My brother and I have been keeping a closer and closer eye on them over the last couple of years. We had carers in for an hour or so once a day to make sure they were having tablets and eating etc and then we would go in too to check on them.
On 2 January late at night we had a call from my dad. He was hallucinating quite wildly and was up around the house trying to ring the police to get them to come and stop the marauding mob outside from getting in. He was really agitated and upset. I calmly took him to look out of every window to show him all was ok. He eventually went back to sleep but obviously mum was very upset and frightened. He was like this for three days - but no urine or chest infection.
Suddenly after a few days, he woke up and everything was 'ok' again - although not where he'd been the week before. They really needed someone with them all the time.
2 Days later, they both fell in the house when I was there! Mum trying to help my dad - thankfully nothing was broken and I was quick on the scene as I was in another room at the time, to get them up and check them over. This obviously didn't help my dad.
Then a couple of days later - my dad started with really heavy bleeding from his penis... (he wears a Tena 24/7 so thankfully it was all contained) An out of hours doctor, scans at hospital and other checks as well as some antibiotics proved that there was nothing sinister and was probably just a burst blood vessel from his enlarged prostate which he does take medication from. After about 5 days the bleeding ceased. Obviously keeping an eye on things...
During this time, I got more and more exhausted as I was not getting good sleep, up and down all night changing my dad etc. I was on the go pretty much 24/7 with the two of them. They both now need help with personal care, dressing and they need someone to cook, make drinks etc etc. I got a chest infection but carried on. Mum then got my chest infection and went off eating for a week and was really poorly and down. She has now recovered but isn't where she was beforehand either. It was then I realised that I still needed to get some extra help in so that I could get some little breaks and reclaim some of my life, and also, if I went down we were all scuppered, I needed to look after my own help.
So, I haven't been home to my other half since then. Bless him, he's very understanding and at least we don't have any kids to worry about but it does change everything. Leaving my home, leaving my job, leaving my income, leaving my social life to a greater degree, leaving my partner.
I'm a self-employed freelance artist and educator - making, selling and exhibiting my work as well as teaching in schools and galleries from primary through to adult and have had to put all this on hold. I have been building this business steadily over the last 10 years... building a solid reputation and earning reasonable money. I am slightly concerned that I will lose my spot on the creative scene and fitting back into that precarious world of freelancing will be harder to build back up again... hey ho. My brother is great - and we get on really well but he has a difficult life and 4 mouths to feed - he does what he can.
Like all of us in these situations, we have no idea how long this will all go on for. At the minute I feel that this is the right thing for me to do, it's what I want to do. I realise I need to be doing it until such a time as something happens to one of them and the next chapter will unfurl.
However, last summer I booked an exciting adventure with 3 girlfriends - 2.5 weeks away to Asia. Flights and everything booked. I was toying about whether I should still go or not. The parents have now all simmered down and are on a plateau but are still in need of daily help. The carers I had in do not do respite or overnights and I have been fretting about what to do for the best so that I can still get on holiday.
I have been in touch with Adult Social Care and am still awaiting assessments for both parents and for me as a Carer - however, time is running out and I doubt they would be able to help me sort cover out so soon and for so long.
I have also looked into Respite in Care Homes - tricky for a couple at reasonably short notice.. (going at Easter) as well as other things to consider. I have come to think that the least disruption for my parents would be to get a live in carer for 3 weeks (I don't think they do part weeks.) At least this would give me time to see that everyone settled in well before I departed. Also, for me to suddenly disappear and their surroundings to change would be hugely unsettling and disturbing for them.
So - lovely people out there - have any of you had any experience of respite live in carers? The positives the negatives, recommendations? Things to consider? I think I have to go on this holiday. I need the break. If I cancel it now and my parents go on another 10 years (unlikely but you never know!) I'll be 63 and maybe not up to as many adventures. My dad's 89 and my mum 83. My mum's mum did live to 100 but never diagnosed with Alzheimers and was pretty independent.
Oooh so I have rabbited a lot here - trying to write stuff down as quickly as I can before I go back to researching live in respite care for a couple with dementia. I think I need to act quickly to get it all set in place. I haven't yet told the parents I'm going - I don't want to worry them unduly until the time is right but I do keep dropping hints to mum that I will always make sure they are safe and looked after, whether by me, or someone else - they are my priority. Mum gets this. I am still very anxious to be leaving them but feel I need to have a life too... my dad's held me back in so many ways in my life and I have a fear he may be doing it again...
So - live in carers - thoughts/help/advice please!
Thank you all for reading to the end! - Sorry so much to read, I hope to hear back from those of you with respite care experience soon!